Federation of European Associations of Patients affected by Renal Genetic Diseases 1 st General Assembly and Board Meeting Cliniques St Luc Salle Debaisieux Friday 7 th June 2013 14h00-17h00
Federation of European Associations of Patients affected by Renal Genetic Diseases 14h00 Pr. Yves Pirson USBL & Bruno Woitrin AIRG-Belgium Welcome and introductory words Introduction of the representatives (in the room and on line) 1 st General Assembly Designation of a Chairman for the GA Establishment of the final list of representatives at the first GA Vote on the status Vote for the Board of Directors Vote for the initial grid of fees Establishment of the FEDERG Scientific Council (Yves Pirson) 15h00 Roundtable on the European Research on RGD: shared perspectives by professionals and patient groups 1 st Board of Directors of FEDERG 16h00
1st General Assembly • Designation of a Chairman for the GA : Daniel Renault • Establishment of the final list of representatives at the first GA • Full members are: – AIRG Belgium: Bruno Woitrin – AIRG-Spain Francisco Monfort – ASHUa Spain Francisco Monfort – AIRG-France Catherine Cabantous – Cystinose France Laëtitia LEPOIX – Cystinose Germany Claudia Sproedt – Renal Association Netherland Marjolein Bos – Cystinose Netherland Marjolein Bos – Alport UKCharity Susie Gear – aHUS UK Len Woodward • Associate members: – AIRG-Switzerland Alain Essade • Members on line: • Kidneycare Bulgaria Veselina Dzhambazova • PKD International Tess Harris
1st General Assembly V OTE 1: Votes on the status: Results full members: 10 Yes /10 Associate members: 1 Yes/1 Main comment attached: the status should provide room for individuals or small groups of European or non European countries, especially important for extremly rare diseases for which numbers are small even at national level.
1st General Assembly VOTE 2: Vote for the Board of Directors Candidates Representing Concerns Bruno Woitrin AIRG Belgique Bartter & All RGD Francisco Monfort AIRG-Spain HUSa & All RGD aSHUa Spain Susie Gear Alport UKCharity Alport Syndrome Michel Shenkel AIRG Belgique PKD Claudia Sproedt Cystinose Germany Cystinose Daniel Renault AIRG-France Alport Syndrome& All RGD All candidates to the Board were elected as Directors by 10 voices out of 10
1st General Assembly VOTE 3: The general assembly of FEDERG consider as a principle that the fees to be met by each member must be proportionate to its capacity. Voted 10 Yes/10 VOTE 4. The General Assembly commissions the board of FEDERG to prepare a grid for setting the fees according to capacity. This grid is to be submitted to an extraordinary assembly for approval before the end of the year with application for 2014. Voted 10 Yes/10
1st General Assembly In view of reaching a sufficient budget for running FEDERG, it was suggested that a minimum initial contribution per member could be of 200 Euros, however the vote by the GA did not retain any threshold. VOTE 5. A transitory fees policy is adopted for the year 2013. It is left to each member to decide how much it can contribute as an initial impulse to the federation. VOTED by 10 yes/10
1st General Assembly Establishment of the FEDERG Scientific Council: Pr. Yves Pirson, acting as scientific advisor for FEDERG initiative, proposed some options to create a Scientific Council (SC) for FEDERG. Pr. Olivier Devuyst as Chair of the FEDERG SC (ERA-EDTA) Pr. Elena Levtchenko (Belgium) (ESPN) Pr. Francesco Emma (Italy) Pr. Oliver Gross (Germany) The Chair of SC of the existing AIRGs: Dominique Chauveau (France), Jean Pierre Guignard (Switzerland), Yves Pirson (Belgium), Roser Torra (Spain) Pr. Albert Ong (UK) Pr. Nine Knoers (Utrecht Nl) This first proposal was approved, but discussions may continue in view of balancing the geographical provenance of members.
Roundtable on the European Research on RGD shared perspectives by professionals and patient groups • Olivier Devuyst Chair of the Working Group on Inherited Kidney Diseases of ERA EDTA • Elena Levtchenko European Society of Pediatric Nephrologist • Marc Taylor Renal Association (UK) (Chair of Rare Renal Disease committee) • Oliver Gross Nephrologist Goettingen[on line] • Yann Lecam EURORDIS • D. Renault AIRG-France and FEDERG
1 st Board of Directors of FEDERG • Election by the board of Directors – President: Daniel Renault, – Vice-President: Claudia Sproedt, – Treasury: Bruno Woitrin – Secretary Michel Schenkel • The board must carry out the task of writing the FEDERG by-laws • Closing of the meeting
Recall of FEDERG Project document and the list of activities discussed and consolidated late 2012
Core activity: Represent and voice RGD • - Participate as a patients group, in European professional societies, rare diseases’ committee, European Medecine Agency and on in the agencies involved in setting the European research agenda on rare diseases. • - Contribute to the dissemination of public health policy in countries of Europe • - Help national associations voicing for equal access to treatments. • - Website: an information platform for RGD in Europe
Activity 1 INFORMATION: Information on Renal Genetic Diseases • Update, translate existing RGD booklets in several languages • Participate to the dissemination of information to patients via professionals in national and international events • Strengthen the transversal knowledge on treatment and on best practices on all what we have in common with regards to: Compliance, transplant, family and social, quality of life “growing and living with RGD”, genetic diagnosis, genetic advising, gene therapy.
Activity 2 PATHOLOGY : Support to pathology chapters • Help associations' representatives (members) in organizing a pathology chapter, within FEDERG • Support participation of patients without national associations Activity 3 NATIONAL GROUPS: Fostering and Empowering RGD national patient groups • Help patients and associations getting together at national levels (alliance, informal groups) • Help creating umbrella national associations on RGD
Activity 4 RESEARCH: Research Agenda • Participate as patients' organization to European projects • Help developing research strategy • Mobilize patients for clinical trials and establishment of registry • Help mobilizing funds for rare renal diseases Activity 5 INTERNATIONAL: International cooperation • Liaise with major patient groups worldwide • Cooperate with patients groups from neighboring countries • Represent Europe patient groups in international meetings (patients and nephrologists)
A first assignment for FEDERG: representing patient in the Europen Research Projects EURenomics and RD-Connect (Starting January 2013) EURenOmics summary • EUREnOmics is a European Research project granted with 12 Millions Euros for the 2012-2017 period focusing on rare renal diseases. EURenOmics echoes the ambitious goals set out by the International Rare Disease Research Consortium (IRDIRC) to deliver by 2020 diagnostic tests for most rare diseases and 200 new therapies for patients affected by rare diseases. EURenOmics brings together leading clinicans, geneticists, translational researchers and experts in the field of -omics technologies devoted to improving the lives of patients afflicted with rare kidney disorders . • EURenOmics has identified five groups of rare kidney diseases with the urgent need and significant potential for di-agnostic and therapeutic progress: Steroid-resistant nephrotic syndrome (SRNS), membranous nephropathy (MN), tubu-lopathies, complement disorders and congenital anomalies of the kidney and urinary tract (CAKUT).
EURenOmics FEDERG is one of the 4 members of the Ethic advisory board! RD-Connect FEDERG is a member of the Patient and Ethic committee IRDIRC International project (not directly involved)
Patient Organisations at lauching meeting in Sitges • Joseph Irwin Member of the Jennifer Trust for SMA and TREAT-NMD • Father of son diagnosed with Type I SMA • Marieke van Meel Chair and Founder of NephcEurope • Mother of a son with Nephrotic syndrome • Daniel Renault President of AIRG-France, Founding member of FEDERG • Father of daughter diagnosed with Alport syndrome • Marita Pohlschmidt Director of Research - Muscular Dystrophy Campaign • Member of TREAT-NMD • Anna Kole Registry and Biobank Projects Manager, EURORDIS • Monica Ensini Scientific Director, EURORDIS • Pauline McCormack Research Associate, Policy, Ethics & Life Sciences (PEALS) Research Centre, Newcastle University Transversal Workshop, Kick-off meeting, 25 th – 27 th January 2013
Next slide is FEDERG CALENDAR of events in which we are or we may be involved!
Recommend
More recommend
